When Mental Health Awareness Becomes Unhelpful

Disclaimer: This post is based solely on my own experiences. You may well have an entirely different experience, and I am not attempting to erase or speak over that. I am sharing my story, and I encourage you to do the same. I'd also like to make it clear that I am not placing the blame for anything I went through at the hands of any individuals. I am eternally grateful for all the support I've received from my friends and family over the years - but this is an issue I still feel passionate about and feel needs to be addressed. 

This month was mental health awareness month, and as a result I saw lots of posts about mental health. Disordered eating aside (that was a fun few years), my own mental health issues are something I’ve been afraid to be upfront about online for a long time. I haven’t wanted to concern anyone, but I’ve been equally worried about not being taken seriously. But my goal for this year was to be unapologetically myself as much as possible, so I’m going to do that today.

For a quick backstory: I’ve been living with depression since I was around 11 or 12, and Obsessive-Compulsive Disorder since roughly age 6. By the time I was 13 I was pretty sure I had depression, and despite only being officially diagnosed with ‘low mood’ until age 19, I did manage to get treatment within a few years - even if it took a while to see any difference. With OCD, however, I didn’t know what was wrong until last year. For a long time, I was under the impression it was an atypical and incurable anxiety disorder - because no treatments for anxiety helped at all. I couldn’t get to the bottom of what was causing it, and the more I tried to understand my ‘anxiety’ the more it felt like it was a snake eating its own tail. It had no logical beginning or end; no rhyme or reason. I was 20 when I got the diagnosis of OCD, and suddenly everything made sense.

I’ve seen a lot of awareness for depression over the years, which is why I realised so quickly what was wrong. Despite not necessarily having the right label, I did receive treatment that was (eventually) effective. But I’ve been living with undiagnosed, and therefore untreated, OCD for well over a decade - and the only reason I finally realised what was wrong is that I saw someone else speak up about their experiences. I watched an OCD awareness video, and everything quickly fell into place. I did some research on the symptoms, comparing my symptoms to those of OCD rather than General Anxiety Disorder, I went to my GP and psychiatrist with what I’d found and pretty soon after I started a CBT program. This CBT has been the first thing in my life to actually make a difference, and I feel like I am slowly chipping away at the hold this disorder has on me. But the thing is that if I’d realised what was wrong earlier, I could have started receiving treatment years ago.

This leads me on to one of my main points here: the lack of diversity in mental health awareness. I had heard of OCD, sure – who doesn’t know about the cleaning disorder? But I looked around at my messy room, and thought ‘no, there’s no way that’s what’s wrong.’. While I’m not comfortable sharing the details of my OCD, I will say that it has little to nothing to do with cleaning for me. In my case, it basically just means I have certain routines and behaviours that, while sometimes unhelpful and unhealthy, I get intense anxiety if I don’t complete. I absolutely love that people are starting to talk about mental health more, but we need to talk about ALL mental illnesses and disorders. Not just OCD but Bipolar Disorder, Borderline Personality Disorder, Schizophrenia, Dissociative Identity Disorder.

I mentioned that I started to get treatment pretty soon after realising I was depressed. I tried therapy on and off, but between private counsellors and NHS psychologists, nothing seemed to work. After a while, I decided I must be the problem. If the therapies didn’t work, it must be me, there must be something wrong with me. Although I don't still think like that, in all honesty, I haven’t made leaps and bounds in terms of depression. I still feel pretty bad, a lot of days. Now, how much of that is due to my poor physical health I don’t and can't know. But the big difference now is that I have better coping mechanisms, and I no longer feel like there’s no hope I’ll ever feel better. I know that I do get depressed, and it won’t pass anytime soon, but I can survive it. I’ve been surviving it for roughly half my life, and I know I can always make it one more day.

“We all have mental health” and “everyone feels depressed sometimes” are things that I’ve heard a lot in my life. Whether it’s come from a mental health professional, a friend, or someone on the internet posting for mental health awareness month, it always makes me feel uncomfortable and invalidated. I fully acknowledge that statements like these are probably helpful to some people, and I know it comes from a place of well-meaning, but this attitude has always frustrated me. Because yes, we all feel depressed sometimes, we all get anxiety sometimes – but we don’t all have chronic depression, or an anxiety disorder, or OCD, or any mental disorder or illness.  Phrases like that always translated to me as ‘everyone else is going through the same thing as you, so you have no excuse to be struggling this much because everyone else manages to suck it up and get on with things’. It made me feel like there was nothing to be done for my issues, because this it was all just part of being human. It made me lose hope for any improvement, because I thought I was being told that going through life constantly wishing I were dead was just as good as it could get for any of us. I didn't believe happiness existed, and sentiments about how 'we all struggle' only backed up that belief further.

Another point I'd like to make quickly is about the comparison so many people draw between how physical health issues are (supposedly) treated vs mental health issues. As someone who has lived with both physical and mental health issues for many years, I'd like to say that I've been believed far more often about my mental health than physical health. I have been told to just 'try harder' not to feel physically unwell, to 'push through' my symptoms, to 'just get up and out the house'. Pretty much anything along those lines you can think of, someone living with a chronic physical illness has heard before. So, before you say "imagine if we treated mental illness the way we treat physical illness" - consider that in many cases, people do.

Now, I know I've complained a lot here today - but I promise I'm not a rebel without a cause. I'm not saying all mental health activism is bad, or even that you should never use phrases about how nobody's life is perfect. I am simply asking that you consider using language that isn't potentially minimising the struggles of people living with long-term mental health conditions. Instead of just saying "we all struggle sometimes", maybe add something like "but that doesn't mean what you're going through won't get better". Say "we all have mental health", and follow it with "but sometimes we need professional help and that's okay". Don't say "everyone gets depressed sometimes" if you really mean "depression can affect anybody". 

Of course, I can't change the past; but there will always be a part of me that wonders how different my life could have been if I'd been given the hope I needed as a young teen that my depression was treatable. How things might have turned out if I hadn't felt for years like my struggles were unimportant, invalid, and that this heavy feeling was something I would have to learn to live with for the rest of my life. 

I wish I’d been told sooner that my struggles were valid. I wish I’d been told that I wasn’t a bad or weak person for needing professional help - and that it really is ok to seek out a diagnosis even if it seems like you're ‘labelling’ yourself. I wish I’d been told that it wasn’t my fault if ‘positive thinking’ didn’t work for me, or that I had panic attacks I couldn't control. I wish I’d been told I deserved proper treatment for what I was going through, and that being denied help didn’t mean my suffering wasn’t real. I wish I'd been told that it wasn't ok for me, or anyone, to have to feel that bad; and that I deserved better. 

As always, if you have any thoughts I'd love to hear them! Sending lots of love to all of you, and especially those of you who are in a dark place right now. I see you, and I truly hope things get easier for you soon.

Hugs,

Isabel xo